[sarita d]

Hey everyone,
It's been a long time since I was last on here and am still no further on.
I have been ill for about 10 years now but my health just seems to be getting worse. I'm in desperate need of advice, I dont no where to turn anymore.
I'm not sure how much more i can take!!!

Some of my symptoms are:

Blinding headaches, have to sit in darkness
Arthritis in my ankles knees and wrists/fingers
Muscle pain, sometimes disabling
Re-occuring kidney infections
Fatigue, god i sleep for about 16 hours a day
Depression, but maybe thats just me being fed up of being ill
Dont have the "butterfly rash" but get lots of rashes, especially in the sun
Seizures, some docs say Epileptic some say i'm not
Severe sun sensitivity, just half an hour and i'm Collapsing
Regular falls


There are sooo many more i could list but i won't.
I've had an ANA test which came back 1:320, i have noo idea what that means :blush:.
My grandmother on my fathers side has lupus, and i realise that i still may not but i just need someone to acknowledge that i'm ill.
Previous injuries tend to heal slowly but as i get ill again they seem to come back to haunt me.
A few months ago i fell down the stairs and hurt my back, been agony ever since. I have only been out of my house four times in the last 5 months. It's so bad that my mum is trying to rent me a wheelchair to give me some freedom from this "prison".
I'm now gonna apologise for the essay, feel like im making this all up but my mum assures me i'm not.
Any advice you could give would be greatly appreciated.

Fankoos

x Sarita x

 

[Lily]

(((((((((Sarita))))))))

I'm so sorry to hear that you are no further ahead than last time you were on. However from memory you hadn't had any testing done then and you didn't mention an ANA of 1:320. Was it a Rheumatologist who did that test for you? If so what did they say about it all?

With an ANA of 1:320 + your symptoms it's certainly enough to raise high suspicion of Lupus. Have they run any other tests on you?

Did you end up changing GP's or are you still with the one who was stuck on the ME diagnosis? ME doesn't present with an ANA of 1:320.............

Hang in there, we will try and help you as much as we can.


love
Lily

 

[x_claire_x]

Sarita.. you know your own body.. and at the moment its in distress..I wonder if its time for a fresh look at everything with a new rheumy?? I would definitely press for re-referral... perhaps up to London? You have the right to ask for referral wherever you wish... I urge you to go to an auto immune specialist with any photos and diary of daily symptoms and grade pain 0-10.. also to establish any patterns occurring. I moaned that it took five months to diagnose me!!!!!!! I think you have been too patient now, time to kick some butts into action... who took the ana test? that is a high enough ANA to be doing some more tests and investigations... be sure that you know you are not 'right' in yourself and go push for some answers... Wish you well,
Claire XX

 

[sarita d]

Hi Lily,

Thank you for your reply.
Last time i was on i had had the ANA test, it was my GP that did it. He will not refer me to a rheumy. He won't even refer me to a neuro anymore because he says he "manages" my condition :lol:.

Nope, have not had any other tests yet because "the budget is stretched to the maximum", yet they found the money to send my 21 year old friend who already who already had 2 kids for fertility treatment. Even though the reason she couldn't have another is cos she weighs 24 stone!!! (sorry i know thats not relevant, it just winds me up!)

I tried to register with two other surgerys and 1 said they couldn't take me because i wasn't in their catchment area, and the other said they couldn't because i am under a "treatment" program with my own GP.

It was him who diagnosed, but i've been told he shouldn't have done because i need a rheum. Is that right??

Thank you soo much for your help.
Luvvs 'n' Huggss
Sarita

 

[Lily]

Sweetie you definitely need a Rheumatologist...............I would ring St. Thomas's and speak to their nurse about how you would go about getting a referral, tell her your symptoms and your ANA result and that your doctor isn't doing anything. This lack of treatment from your GP is appalling What exactly does he think he's managing..............he's done nothing for you!!! How anyone could diagnose someone with ME with an ANA of 1:320 is beyond me.........it's negligence !!

sending strengthening hugs.

love
Lily

 

[sarita d]

Hi Claire,

I've never been refered to an rheumy at all and am wondering if there's a way to get a referal another way??
I think kickin sum butts is the only way :hehe: I just wish i had the energy to argue with him :hehe:

Thank you for your help
Luvvs 'n' Huggs
Sarita

 

[sarita d]

Lily,
OMG, i didn't know i could do that :blush: I'm going to do that later on today.
Maybe she'll be able to help.
Yipppeeeee, sounds silly but i feel like i might actually get somewhere
Thank you for your kind words, it means soo much just to have people listen and believe me

Luvvs 'n' Huggs
Sarita

 

[Abi]

Hi Sarita,
I'm not dx either (13 years of symptoms), and like you I've had a bad time with Drs. Altho I've seen 2 rheumis, both were a complete waste of time, dismissed my raised ESR, LFTs and ANA's - one suggested 'psychological help' would be best and the other one dx me with Chronic Pain Syndrome (characterised by drug addiction and 'dramatization of complaints') in about 3 minutes flat. My GP thinks I'm a hypochondriac, but I'm going to try for St Thomas's too, maybe we'll meet up? ;-)
We can encourage each other to keep fighting, yes?
Hang on in there, babes!
Abi

 

[x_claire_x]

Hi Sarita.. sometimes you can also get referral by going to a locum GP when yours is on holiday!! It's a good idea to know who or where you need referring to, so a rheumy with auto immune experience is a good idea or a centre specialising in auto immune stuff like lupus (St Thomas's).. a friend of mine survived cancer because the Consultant went on holiday and his registrar took the opportunity to refer him because she felt he wasn't diagnosed correctly.. she was right, her referral saved his life.. the pity is that she was junior to him.... but more knowledgeable. Scarey stuff Anyway I am gabbling on.... do it however you can, but make sure you do it somehow.. you know your health better than any Dr, and you deserve much better consideration and care from the health service.. go for it and don't let anybody put you off.. all the best,
Claire XX

 

[LolaLola]

Sarita, Hello we haven't "met" yet. Do remember that if the worst comes to the worst and you do not feel strong enough to fight for an NHS Referral you would have the option of going privately to The London Lupus Centre. I had to go privately to start, many of us have. I know it costs money but it is good to know that the option is there. It is very unfair to have to fight for a fair deal from your GP.
x Lola

 

[Lily]

Hi Sarita,

Just wondered if you were able to get onto the nurse at St. Thommies?

love
Lily

 

[Pink Pearl]

Hi Sarita,
Good luck with getting in where you need to be seen. I am so spoiled with the US system where we do not have to wait for referral. [yet anyway]
Sally

 

[Sage Hen]

Hi Sarita,

Just wanted to say, I am so sorry your suffering so badly. I hope you can
get in to see a good Rheumy very soon. In the mean time..I hope you can
hang in there, and that we can be of help to you..

Love,
Sandy

 

[lazylegs]

Sally is obviously fortunate to have a health care plan that does not require a referral. That is not the case for all health plans in the US. The wait time can be extremely long depending on the specialty. Furthermore, many specialists will not even see a patient without a referral.

There are many pros and cons to any of the health care plans or systems. We are not here to debate which system is the best. Our goal is to help each other work within the system we each have to get the best care possible.

Sarita, I hope you will be able to see someone at St. Thommies. Many of the members have had positive comments about the doctors and care there.

Take care,
Lazylegs

 

[greenhaggis]

Sarita,

Have your been to see another GP yet asking for a referral...I hope so!

Let us know how things are!

 

[sarita d]

Hi everyone,
I'm feeling a lot more positive today, I have an occupational therapist coming to see me soon. They're going to help me with mobility aids and also moving to a new place .
There's also been speak of them refering me to St Thomas' so i'm keeping everything crossed :hehe:
Things are looking up a little but i'm off to see my GP in the morning so i'm sure it will have all changed by tomorrow afternoon lol.
I'm off back to sleep now.
Thank you all soo much for your support.
Luvvss 'n' Huggss
Sarita
xxx

P.S
Just to Lesley,
I tried registering with two other surgeries but 1 said they couldn't take me because i wasn't in their catchment area, and the other said they couldn't because i am under a "treatment" program with my own GP.
xxx

 

[Clare.T]

Hello Sarita

Good about the OT and I hope they come up with some helpful gadgets and notions. Your GP's behaviour is way out of order, shockingly so to my mind, so I would complain to everybody within earshot who could possibly be in a position to help you as well as writing to your PCT and copying to any relevant person such as your MP, the Minister for Health or any concerned groups. There is some organisation that looks after patient rights on NHS and there might even be a forum for difficulties such as yours.

If you haven't already written formally to your GP do so first demanding a reply in writing. Otherwise he might start saying you have misunderstood or never asked or any old rubbish to wriggle out of responsibility.

First, ME is a diagnosis of exclusion. The GP is refusing to explore other explanations for your symptoms. If lupus is a definite possibility then with that titre ANA further specialised testing absolutely should be done. So what exactly is he "managing".

If you do have a connective tissue disease it is essential that you get the correct treatment to stop it developing further. It also needs specialist treatment as these diseases and their treatments are way beyond a GP's expertise.
There's also the question of refusal to refer you back to neurology. I can't comment on the rights and wrongs of that but it is surely the norm to see a neurologist regularly with neuro complaints and to check on treatment status. These seizure episodes could well be associated with CNS lupus too.

A good rheumatologist refers out to other specialities as necessary. I'd also request test results and your medical notes from your GP. We are entitled to those.
The only thing is that they are required to remove any references to third parties to protect their data and confidentiality. If he refuses to give them to you then you will have to contact the PCT ( I think it is) and there's another strike against him, very telling of his whole attitude.

I know that it's hard to act in this assertive even aggressive fashion but it is your health and the quality of your life that's at stake. Find out about local rheumies by the way. Ask here or contact your LUPUSUK area branch. Maybe there are very competent ones near you. It is much better to have local specialists then to rely solely on St Thomas' as after care there is very restricted. Even when there is an emergency or especially when, as getting there could be tricky or impossible

I had my last annual there in June this year. My next check up is December next year ! I don't need regular appointments because I am so stable and virtually in remission but it also means that I have no opportunity to discuss treatment options, and don't get any specialised testing.

Wishing you strength and the best of luck !

Hugs
Clare

 

[greenhaggis]

Good luck with th OT and I will keep fingers crossed that are referred to St Thoms (remember to push/remind them)!

As to the GP change...I was not referring to changing surgeries, just seeing another GP within your current surgery. I myself have a designated GP within the surgery...but by golly I avoid him at all costs! I choose to see others at the surgery that are more helpful. You can I think in all practices in UK see whom you like for appointments. The only relevance your nominated GP has is if you need or qualify for home visit!!!

Perhaps you have already seen a few other GPs in your practice!

Anyway, goodluck again and keep us informed!